Entries in Keytruda
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If you are old enough to remember this song, then welcome to the last six weeks of my life. We went from change of plans with the Keytruda, to running off the muddy road of tumors, chemo, and kidney stent. The road was dark and at times scary with multiple trips to the hospital for treatments to stop the progression of the cancer and to keep me from having to deal with a colostomy.

I have to say that the last six weeks have been in pure survival mode. I took a months leave from work. Everything was geared toward how does one survive such pain, and once the pain was under control how does one help the body to survive the horrors it has been through. Food was not my friend. The only constant was whatever went in, was bound to come back up. I lost 20 pounds and found myself confined to bed and depending on family and friends to take care of me. Quite the twist and lessons to be learned.

Fast forward and I am finally beginning to feel like we are leaving survival mode and taking the first steps into healing and recovery. It has been a long and challenging journey to be here today. I went from having a no meds list when I went into a doctor's office, to several pages of everything but the kitchen sink. Bottom line, patience, good doctoring and the belief, cards, flowers, food, prayers that screamed just say "NO" to cancer, that put me back on solid footing and the road ahead although still uncertain, looks clear.

Next stop, I am having a subcutaneous port implanted tomorrow morning. I have resisted this step for the past two chemo rounds. My veins are no longer cooperating and having to be poked several times on both arms to try and get an IV for the chemo and fluids, has become a weekly challenge. With blown veins, and the painful experience of multiple pokes, I decided to let go of my 25 year old stereotypes and listen to my doctor. After showing me the port, how it is inserted and the fact that my veins were screaming for help, I find myself at another cross road. Should breeze through this one and will see you on the other side to fill in the blanks of the past six weeks. Climb aboard. This ride is bound to get better.

If there is one thing life is full of, it's change of plans. What's that they say? Life is what happens while you are making plans. I have my schedule full of Plan B, C, D, that now I am resorting to XYZ!

CT scan results this week show that I have crossed the threshold of progression to keep me on the drug study. As of Tuesday, September 6th, I am officially off the study. To say I am disappointed would be an understatement. I am struggling with feelings of failure and apprehension. Trying to keep my apologies to a minimum as I find myself with an overwhelming sense of letting my famiily, my friends and my readers down. I present a picture of strength and warrior like stamina. It seems there are larger chinks in the armor than I care to admit.

Enough! This is not a setback. It is a change of plans. Although discouraged, I will take this change of plans as my own progression forward. The Keytruda did not work for me. My doctor believes it kept the cancer in check, but not enough to force remission. Hopefully there is some good evidential research that comes from my experience that will indeed move immunotherapy in the right direction for ovarian cancer. But right now, I have done my bit for cancer research and need to clear the decks for this new plan. Chemo.

After Dr. Anderson said, you are off study, all I heard was "blah, blah", similiar to what Charlie Brown hears when the teacher is talking. He did, however, reassure me that once he sits down with me and shows me the pictures, he is confident that I will see that this is not a bad thing. Spoken like someone on the other side of the chemo chair. On the other hand, for whatever reason, I am feeling better than I have in months. Whatever else happened in the study, for that I am grateful. Perhaps it was what I needed to get back into the chemo chair. Time to heal. Time to believe. Time to gear up for plan XYZ.

So stick around. I have much left to do and have every intention of showing Cancer this is not over by a long shot. To Jimmy Carter and for all those that the drug has worked successfully, thank you for blazing the trail. Immunotherapy is the new face of cancer. For our children's children perhaps, but the fight is clearly moving in our favor.

Checking out the blessings today...I can have grapefruit juice again! Bought a case and using it to celebrate! Antacids are back on the medicine shelf! No CT scans every 6 weeks! There are moments when you reflect on what is good about game plans changing. That is my new focus.

My friend, Ellen, sent me this t-shirt, not knowing what my day had been. I wear it proudly, ready to do battle with my nemesis. Now, let's roll up our sleeves and get on with it.

Despite a challenging week of news that not only have the original two tumors grown, but three more have appeared, I find myself at the crossroads of chemo vs clinical trial once again. Cancer may have won round one, but I am not down and out just yet.

The next squirmish begins on June 21st with the addition of the drug Pembrolizumab or for us non-medical geeks, Keytruda. The drug is dispensed through infusion, similar to chemo. It is a monoclonal antibody and used in conjunction with my current medication of Acalabrutinib, its function is to stop or slow down the progression of the cancer.

Dr Anderson reassured me that I have not lost ground, but it does feel that way. I was not surprised by having to switch to the study on both drugs, but was discouraged at the news of more tumors. They are extremely small but nonetheless they are there. His words were that without the drug, this would be a crisis and the tumors would have grown exponentially. The fact that the drug was able to keep us at the slower pace of growth is good news, but not enough to bring out the band.

Still, it was discouraging to me and to my family that the past three months have only made small steps forward and what seemingly feels like a few steps back. I can at anytime choose to take chemotherapy. Dr Anderson readily admitted that the tumors are so small that chemo would knock them out quickly. The immunotherapy drugs are slow acting, hence the new growths. It takes the Acalabrutinib three months to show results. But not one to back down from a good fight, I have opted to add the Keytruda and see this to the hopefully meaningful results we need.

Other new horizons in cancer therapies are DNA repair inhibitors, that help chemo's effectiveness by working on the DNA's ability to repair itself. The Nobel Prize was awarded to Paul Modrich, Tomas Lindahl and Aziz Sanca for the mechanistic studies of DNA repair. Which is alot of jargon to say, if we can use immunotherapies to keep the DNA from repairing itself, cancer could be stopped in its tracks. Effective in colon cancer and lung cancer, we are now seeing studies to find applicable patients who have similar DNA repair defects.

All this encourages me to continue the fight and to see what changes are rapidly being made to give cancer the knock out punch, or to at least change the face of the disease from terminal to chronic and keep cancer down for the count.

Feeling a little like Muhammed Ali...float like a butterfly, sting like bee. Cancer, you have not seen the last of me!

If there is one game where all cancer survivors know the rules, it is the Waiting Game. There is never an instant answer. It is never a yes or a no. It has more shades of grey than EL James book and the best you can do is remind yourself that you are not in control of the outcome.

This may seem harsh, but it is true. You walk in the doctor's office not feeling well, or maybe feeling fine but your body and patience are tested as you wait for results that will ultimately change your life forever.

That is where I am this week. I have been in the clinical trial for 10 weeks. All in all, it has been a walk in the park compared to a year ago with surgery and chemo. There are thin lines between the drug, age, cancer and everyday stress. I am beginning to know the difference and adjust the sails accordingly. Next week, is the cat scan that will determine the course of action for the months to follow.

The regular cat scan schedule marks the growth of the two tumors on my pelvis. The current drug (Acalabrutinib) is working to keep the growth at bay. Its initial reaction is to cause inflammation as my immune system engages the cancer in a squirmish. The full effect of the drug takes three months. Much slower than chemo, Acalabrutinib, takes time and is the reason it is not used on advanced cancers at this trial stage as mine was a year ago. The study after 10 weeks is now closed, so I count myself fortunate to be among the few who were selected.

This next scan will mark the growth again. Dr. Anderson will assess if there is enough stability to continue the one drug or if we need to add Keytruda, an infusion drug, to help stimulate the immune system further. I am not sure what to wish for, since the addition of the Keytruda means we reset the clock and start the treatment protocol as of day one on June 14. The last three months are wiped off the record and we go again with the weekly testing and blood draws. On the other hand, it means we are pulling out all the stops and wage full out war.

Meanwhile, we wait. Wait to plan for the summer. Wait to plan for seeing a Giants game in August and a Mariners game in September. Wait to plan for a Mavericks concert in Portland. Wait to plan for work. Wait. How will I feel if I am on the new drug? What will the new protocol calendar look like? Wait. Wait. Wait.

Yesterday was the first day I have felt anxious about this process. I can't explain why, except to blame human nature for being impatient with all the waiting. My daughter was disappointed this was not going to be a cure but a maintenance of the cancer. It struck me that I may feel "fine" for the rest of my life. That the measure for how I feel on a given day may be a game of inches. Again, it comes to that thin line between aging gracefully and immunotherapy. But the reality is, once you have cancer, you are forever waiting. Waiting for the other shoe to drop. Waiting for the monthly, quarterly and yearly check-ups to give you peace of mind or toss you in the tornado of medical practice.

We learn to wait with hope and faith. In the infamous words of Dory in Finding Nemo, "when life gets you down, you know what you got to do? Just keep swimming, just keep swimming."

This is week seven of the trial study. For the first four weeks, I was expected to keep one day a week free to wait for repeated blood tests and other screenings. The process is about six hours long and although most of the time you are indeed, sitting and waiting in the doctor's office, it is taxing on the psyche.

You arrive and the phlebotimist, aka blood sucker, draw several vials of blood for testing. You are asked not to take your morning dose of the drug until this is done and the doctor has had a chance to review the results. You wait. The nurse calls you in and you are weighed, vitals are taken and the doctor comes in and asks a series of questions. For the most part, it is "how are you feeling" but there are a few pointed questions, like is this or that the same or different from when you started treatment. He reviews the test results with you and then you are taken to a treatment room where you take your morning dose of Acalabrutinib. Over the next 90 minutes, blood is drawn every 30 minutes. Then you progress to an hour, and then two hours. You have an EKG and your day is done. In the two hour window you may leave and return, but other than that you sit and wait.

If you have ever had multiple blood draws (total of six over the six hours) and you are a chemo survivor, you know eventually your veins cry uncle. It becomes painful and you look like a bruised pin cushion by the time they find enough places to draw from a vein. They do not do it in the same vein each time, so both arms are assaulted and your neck has a kink in it from looking the other way. Although I am not technically doing anything, I am exhausted by the end of the experience and ready to go home.

After four weeks of this, you graduate to a three week routine. Throw a CT scan in there for good measure and you have my past seven weeks. The CT scan was not good but it was expected. This first scan shows that there is inflammation in the pelvis. This means the immune system is fighting bravely and although the hope is that it will be the victor, at this stage, the cancer is most likely overwhelming it. It takes about three months for the drug to be at its peak performance. This first CT scan is therefore an indicator that there is still a long way to go.

The next hurdle is a second scan scheduled in four weeks. This is a more accurate depiction of where we stand. If there is 20% growth in the tumor, then I will be added to the second study and given Keytruda in addition to the Acalabrutinib (I warned you the difficulty here would be in the pronunciation). The Keytruda will be administered as an infusion, similar to chemo. We then hit the reset button and the study begins again as if the past three months never happened.

For the next three weeks, I am on my own, although the doctor keeps a close eye on symptoms I may experience in the meantime. I feel like my body has finally adopted this new way of life. The symptoms, mostly gut related, have leveled off and feel predicatable and manageable. There are no highs and lows like chemo. I am still losing weight and my appetite is not what it was, but I feel good and am slowly getting back to my exercise routine. I am grateful for small blessings. The next hurdle lies ahead and will hopefully show my body is whipping cancer into submission.

For all of you survivors, caregivers, friends and family of loved ones going through cancer treatment, be positive, be brave, be optimistic. The hurdles may seem insurmountable, but for every one we jump, we are that much closer to the victory lap!